Xoxo, Wheelchair Girl

Hi! My name is Sara, I'm 17, and I got sick 7 years ago. I met "Sick Chick" about four years ago back when we both lived in California, we instantly became good friends. I now live in North Carolina and am getting treatment at Duke, which I love. I have Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers Danlos Syndrome (EDS), Gastroparesis, Platelet Storage Pooling Deficiency, Mast Cell Activation Disorder (MCAD), and many more diagnoses.

Since junior high I haven't been able to go to school. Not being able to go school has been hard. I have lost a lot of friendships, but I do have great “Potsie” friends who understand me and are always there for me. It's just hard not to experience the high school things that I should be doing ,you know? Like dances, boys, driving, ect...

I've actually met some great friends since moving to North Carolina. And they don't seem to forget about me when I cant follow through with plans. They come visit me and they invite me to their high school events. I feel like I'm part of a high school group for once. Even though it's hard because I can't participate sometimes because I’m too sick, or they are doing something that my body just can't do, I know that they will be there for me the next time.

It's crazy to think that soon I will be 18 and "normally" would be going off to college. But, I have a lot of credits to finish because I’ve missed so much school. All my friends are counting down the days until they graduate. I'm counting down the days until my next bag of saline. It's going to be hard to stay at home while everyone goes to college, but it is what I have to do. Sometimes plans change. Maybe I can go to college next year, who knows?

Sometimes I miss my old healthy self, sometimes I don't. I mean, yeah sure, I miss being healthy and full of energy and all that crap. But I wouldn't change any of this. I am lucky as heck to have met so many people along my journey. Even through the bad stuff there is good. We can always find good.